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Hannah Davis 🦈 Profile picture
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22 Mar, 4 tweets, 3 min read
An excellent piece by @DocAmali on why COVID and #LongCOVID support groups need to be ethical in their practices, including protecting the privacy of the patients who participate. Otherwise, they risk "objectification and exploitation of vulnerable participants."
This is why @itsbodypolitic is a private, patient-only support group hosted on a platform that doesn't exploit participant data, and has rules that explicitly prohibit scraping of support group data! #LongCOVID

@DocAmali's call to action: "Governments & regulators internationally should collectively develop policies to combat unconsented use of social media data for healthcare research, & also bring in new laws to prohibit unethical data mining of social media platforms."
@hmkyale @EricTopol you may be interested in the above piece!

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More from @ahandvanish

Hannah Davis 🦈 Profile picture
21 Mar
.@YoDoctorYo @brucep13 have you seen this paper? it shows elevated cytokines in early ME patients (<3 years) that decrease in patients who have ME for longer than 3 years. How does this relate to the long hauler index “improving”/decreasing? #LongCovid

advances.sciencemag.org/content/1/1/e1…
Lots of expert authors on this paper, including @mhornig @LBatemanMD @ngklimas
@YoDoctorYo thanks for replying but my question hasn't been answered. Specifically: they found similar elevated cytokines as you (like IFN-γ) in early ME patients, that decrease in later ME. How do you know a decrease means an improvement & not exhaustion as theorized here?
Read 4 tweets
Hannah Davis 🦈 Profile picture
20 Mar
This is one of the wilder papers I've seen - PCR tests for COVID are over twice as likely to be positive in the early afternoon. 1/

medrxiv.org/content/10.110…
"The strong diurnal sinusoid pattern in the fraction of positive tests suggests a cyclic pattern in viral shedding, with a peak in the early afternoon. This aligns with previous findings for other viruses such as influenza, herpes, and dengue... 2/
...where interactions with the immune system lead to diurnal variation in viral shedding and symptoms, and have been shown to influence vaccine effectiveness."
3/
Read 4 tweets
Hannah Davis 🦈 Profile picture
1 Mar
My first #LongCOVID symptom was that I couldn't read a text message.

Most of the time when I tell people this, it's met with shock or surprise, but it's not really uncommon. Here's a piece on "Long COVID's dementia symptoms" in younger people. 1/

thetimes.co.uk/article/i-left…
"Dozens of younger adults recovering from the long-term effects of coronavirus have unexpectedly displayed dementia-like symptoms, including short-term memory loss and an inability to read or form sentences." 2/
A doctor leading a study into “long Covid” said that virtually all her patients aged between 18 and 40 had neurological problems, ranging from impaired balance and motor control to physical numbness and difficulty with language. 3/
Read 6 tweets
Hannah Davis 🦈 Profile picture
9 Feb
Tweeting the WHO's conference on #LongCOVID (called "Post COVID-19 Condition" here) as possible.

It starts off with the amazing @LongCovidSOS video from earlier this year: 1/
Dr. Pardo-Villamizar giving us a history of the (mostly neurological) symptoms from pandemics in the past. 2/
Dr. Dale Needham on post-ICU syndrome. Symptoms are similar to non-hospitalized #LongCOVID. Mentions the 6 minute walk test - would be helpful to do on non-hospitalized patients too.

Cognitive test scores look like TBIs or mild alzheimer's, no difference in severity. 3/
Read 39 tweets
Hannah Davis 🦈 Profile picture
6 Feb
This is an interesting #LongCOVID theory - that there is persistent brainstem dysfunction (likely in tangent with other immune issues like immune dysregulation, reactivation of other viruses, onset of autoimmune conditions).

A thread including some new & important papers: 1/
"Persistent Brainstem Dysfunction in #LongCOVID: A Hypothesis." Would be very curious to hear researchers' thoughts on this one! 2/

pubs.acs.org/doi/10.1021/ac…
Hypometabolism found in brain PET scans in #LongCOVID patients! link.springer.com/article/10.100…

Results: a decrease in brain activity in:
-olfactory bulb
-limbic regions: memory/emotion regulation
-brainstem: autonomic functions (breathing/sleeping)
-cerebellum: motor skills/balance 3/
Read 7 tweets
Hannah Davis 🦈 Profile picture
14 Jan
#LongCOVID fam: it took me many conversations with patient #pwme to understand that ME is a full-body systemic illness.

"Chronic fatigue syndrome" was named by a dude who later apologized for the name's triviality. ME/CFS is as severe as LC & needs to be thought of as such. 1/
His apology:

2/
Check out these symptom lists for ME from 1990 and 2001 - they look familiar...

3/
Read 5 tweets

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